Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: having thoughts of stopping meds (Read 33724 times)

Jake, I just want you to know that I fully support you in whatever decision(s) you make, regarding treatment. It is a very personal thing, and I think you are wise to get other's opinions, but first and foremost, rely on your doctor. Now, if you're not happy with your doctor, that is another subject, for another topic !

Let me just throw this out as "food for thought". Since 1988, I have taken truck-loads of pills. Right now, I take about 25-30 each day, including vitamins and supplements. So for me, it's not really about the 'number of pills', but how the drugs are working for me. My experience has been that with most drugs, there is a "trade-off". If you take something for depression, it can make you feel 'numb' or without emotion; if you take something for neuropathy, it may cause a headache; if you take something for blood pressure, it may cause you to feel dizzy at certain times. For me, everything is a trade-off, between how well is it working vs. the "manageable" side effects. Some things, I don't have a choice about (like my HIV meds, or my heart meds) Some things, I do. I choose not to take anything for neuropathy, because I can deal with it, and would rather deal with it than the side effects. Most of the time, I choose not to take anything for nausea, because it makes me sleepy and tired.

This is all stuff that you will figure out on your own, in time. You're doing the right thing, asking for opinions and suport, and following your doctor's best advice.

HUGS, Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

The doctor just called and ask how is everything. 6 days and feeling better each day even to the point when I'm done writing here I'm going hiking today. First time this year. I have to admit last night when I jumped on here and asked a question it hit me kinda hard "shit what else am I not thinking about". So bmancanfly asked some good question and here's what I've come up with. I have had a ID doc since I found out. Its a doc. I trust and feel they care. We both agreed today I will not be going back to the study. I am to go in once a month they said for 3 months to get labs done. Then after 3 months depending how they are i get to go to once every 3 months. My mental plan (because we will have to see what reality does) is too stay off till my CD4 hits 500. I never really given any thoughts to viral load. I feel kinda stupid asking but from what I am learning its all about the CD4 count, so should there be a red flag getting to a certain viral load number. As I type this I am thinking wow something so obvious of a question.

Man o man I am getting a lot of shit from my family and close friends who know of the situation. (non are +) Its hard for me to listen to their advise because it comes more from fear (which i feel horrible adding to their lives) not one of quality of life. Guys and gals for the last 9 months I honestly felt like crap. This last week has been a god send to know I don't have to feel that way. Granted I didn't think not taking anything was a option. But he res the next question. Is it OK to wait to see a CD4 of 500 before moving forward again on meds and is there a viral load number I should keep in mind as well. As always thank you. Peace out I'm going into the mountains now. yeaaaaaaaaaa

Is it OK to wait to see a CD4 of 500 before moving forward again on meds

Yes. A CD4 of 500+ is normal. Plus taking into account how you feel in your body, other health problems etc, this is also important.

Some people will say there is merit in looking at viral load, but personally, I read the benefit of taking this into account as marginal. An active virus, particularly at high level, can make you feel tired, and this may be something practical you want to bear in mind if it comes to pass.

I'm sure there are different views about viral loads however, I have read that regardless the number of cd4's a high viral load of greater than 100,000 is reason to initiate therapy. But like i said im sure there are different views on that.

• Antiretroviral therapy (ART) should be initiated in all patients with a history of an AIDS-defining illness or with a CD4 count <350 • ART is also recommended for patients with CD4 counts between 350 and 500 • ART should be initiated, regardless of CD4 count, in patients with the following conditions: HIV-associated nephropathy and hepatitis B virus coinfection when treatment of HBV is indicated << shame they didn't mention hep C, TB or older age/risk of heart disease• A combination antiretroviral (ARV) drug regimen is also recommended for pregnant women who do not meet criteria for treatment with the goal to prevent perinatal transmission• For patients with CD4 counts >500, panel members are evenly divided: 50% favor starting ART at this stage of HIV disease, 50% view initiating therapy at this stage as optional• Patients initiating ART should be willing and able to commit to lifelong treatment and should understand the benefits and risks of therapy and the importance of adherence, patients may choose to postpone therapy, and providers, on a case-by-case basis, may elect to defer therapy based on clinical and/or psychosocial factors.

Some people say, but the research doesn't justify (or it would be in the guidelines).

Sorry hit the wrong button. What i was going to say is I feel like a completely different person off those things. No more nausea, fatigue, muscle aches, and depression. My head is finally clear and I feel great. Doc and I agreed that I will just stay off meds till I hit the 500 mark. I'm really hoping with my CD4 at 1200 it will be at least a year before I have to start again. I will get labs done again the first week of July and I will let you know how it goes.

Sorry hit the wrong button. What i was going to say is I feel like a completely different person off those things. No more nausea, fatigue, muscle aches, and depression. My head is finally clear and I feel great. Doc and I agreed that I will just stay off meds till I hit the 500 mark. I'm really hoping with my CD4 at 1200 it will be at least a year before I have to start again. I will get labs done again the first week of July and I will let you know how it goes.

I think it's been over two weeks since Jake stopped his medication -- why is everyone re-litigating the issue? He made his decision, and it was all discussed for like a month in another thread before he actually stopped. At some point people need to respect his decision whether or not you would have chosen to do the same thing.

I stop everything at once. Was off everything for 2 weeks and doc said I had to go back to taking androgel because they said my testosterone levels are dangerously low which could cause other problems. So has of right now I take a double dose of that gel and that's it.

At some point people need to respect his decision whether or not you would have chosen to do the same thing.

I totally agree. What many seem to be forgetting is that Jake's situation is quite different to many here - namely that he started meds early on in his infection with excellent numbers. He didn't need to start when he started and there's no good reason why he can't take a break.

I think I said previously either in this thread or the other one on this subject, that there have been many pregnant women who started with excellent numbers - only for the sake of the child - and stopped meds after the birth. The women I know who have done this have had no problems and many were able to go for years with good numbers, without re-starting meds.

Stop the panic already! Jake plans to keep monitoring his numbers. It may be quite some time before he needs meds again, or he may need them in the next year or two. He'll try again when he needs to - at least that's what I get from all that he has written about his situation.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Ann you are right when I need too yes I will pick another regiment and go back on. I'm really curious to go back and the next set of numbers now off meds. I am curious to see how fast or slow they start to fall. Keeping fingers crossed that it will be slow.

So I have a new question. If some pills are this or that isn't it always best to be on some type of cocktail to block it from growing in all 3 ways. So besides atrpila ( sorry if that's not spelled right). What other one a day pills are there.

Atripla is the only once a day single pill currently on the market but there will probably be one or two others by the time you start.

And there are a number of once a day combos if you are willing to swallow a few pills instead of just one. Either Truvada and Epzicom are once a day pills with two drugs. Then you just add a thrid drug like Rilpivirine, Viramune, Reyataz, Viramune ... (lots of options)

There are lots of 1 x day combinations. They all work. Even tho they are more pills.

The marketing trick pulled off by Atripla makers BMS and Gilead was to get three meds in one tablets.

But, 1 x day with more meds is not automatically less convenient, it just appears so I reckon. They go down simple enough in one fell swoop.

Viramune XR (if your CD4 count is low enough when you start), Reyataz and Prezista to start are genuine 1 x day backbones for an effective combo (need to add 2 nukes to these). Some others work 1 x day too for most people.

The reason a combination of at least 3 drugs from 2 classes is used is to prevent resistance. HIV evolves rapidly, and having just 1 class of meds attacking it allows it to adapt to the environmental pressure. Therefore treatment eventually stops working. 3 meds from 2 different classes used together overcome this.

Some people can manage with 2 meds from 1 or 2 classes, and some with 1 med from 1 class* (when the virus has been put to sleep, ie "undetectable" for some months). A few people will need an extra med** (prob, alas AZT or, better, a new one like Isentress etc) to reach the benchmark consistent viral load of 50 copies or less.

The future holds the serious possibility of a range of new delivery mechanisms*** and pharmokinetic enhancers to allow lfor ess meds less often, so even with existing compunds the convenience factor for ARVs looks good****.

- matt

* Some boosted PIs to be specific** or higher dose of 1 particular med*** this includes d4T and efavirenz, and things like monthly implants etc**** this prob also means lower doses and biologically better targetted therapy which means less side effects for the same benefit

Hmmm... that is if the massive DoJ criminal probe of Gilead announced late Friday doesn't foul things up

What's scary about this probe of Gilead is that it is criminal, not civil. Apparently it is related to the quality of their manufacturing and distribution processes, practices, and facilities.

Logged

"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I am going through the same thing. My doctor had put me on an aggressive treatment and it left me almost disabled. Now I have stop med until i see him again and do the old HIV combos that worked without side effects. My right hand, which blew up like a ballon, is just coming back to function, I still have "water on the knees," and my feet also retains liquid which makes it hard to walk and to do my normal activities.

I do not think being off meds is bad as long as it is temporary, and that so want to get back on it before my viral load goes up or my cd4 goes down. At the last blood test, cd4 was 600 and vl undetectable.

My problem is that before all this happened, I felt healthy and happy with the meds I was on. Now after the changed in combos, I am left practically handicapped. I have to see a orthopedic to find a way for me to regain full use of my limbs.

Life sucked two weeks ago, but now the problems have lessen and I have confident that I will recover.

Well, I'd tried not taking meds for a week and I forgot that I have lost all defense to HIV. I lost a lot of weight in that week and boom, that was the first sign that my body was in jeopardy of losing the battle. So I started the meds again, regain a lot of my weight and will see the doc today to make sure that I am healthy. Be very careful for if you do not have something in your body to defend against the HIV, your body may go fail quickly.

So a update. Been off meds now roughly over a month. Went yesterday for a check in and received my numbers from 2-3 weeks ago and my CD4 was 1081 46% and viral load still undectable. I will get my numbers for the next week for the month plus a week off meds. Doc said to expect to see a drop in those numbers. We will have to see. But I am amazed at how much better I feel off those things. The only problem I am having is my testosterone levels still falling. Now under 100. So starting this week time to start testosterone injections. :-(. Not happy about that one.

Jake, those are great numbers and it's nice that you feel so much better. As for your testosterone supplements, if you notice large mood swings from the shots, you may be able to use a topical version. You have to apply it each day, but you get a steady dose and don't have the wide mood swings.

I have been taking Adrogel but my insurance decided they are not going to cover it anymore. So doc switched to another gel and with my insurance my copay is 500.00. Well that isn't going to work. So for a month supply of the shot is only 80.00 with my insurance and well it looks like I don't have a choice. Not only that I have been on the gel for about 2 months and my levels are still falling. For some strange fucked up reason my HIV loves testosterone. It really sucks. I feel like my manhood is under attack. Already stopping the gel for a week I feel the fatigue starting to settle back in. I'm not looking forward to a weekly shot in my leg but once again I feel as thow I have no choice. But to get back to the original topic being off meds my numbers have remained pretty strong. I will update you guys next Tuesday when I get the one month off meds numbers. I have to admit I'm on pins and needles hoping they haven't dipped too much because I would like to ride this med free train for a while.

btw, Ive been on Test injections for about 9 mos now, was on test patch for about a year prior to that. Jsut recently got my levels up to normal after starting at 32. You should see a difference in your energy etc..pretty quickly with the injections.

Well I learned today stopping meds does have it's cost. Cd4 went from 1081 to 797 in one month. Vrl load hasnt come back yet so it looks like I don't get to ride the med free train for very long. Nothing else to say

Well I learned today stopping meds does have it's cost. Cd4 went from 1081 to 797 in one month. Vrl load hasnt come back yet so it looks like I don't get to ride the med free train for very long. Nothing else to say

What the hell are you complaining about? 797 is a respectable number and isn't a clinically significant drop.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Even though a 284 drop in cd4's in one month sounds significant, its not. Cd4's bounce around, they can vary not only month to month but even during the course of a day. In this type of circumstance it would be better to compare your cd4 percentage from last month to this month. The percentage should be more consistant reassuring you that this drop is not clinically significant, as Ann said.

Well I learned today stopping meds does have it's cost. Cd4 went from 1081 to 797 in one month. Vrl load hasnt come back yet so it looks like I don't get to ride the med free train for very long. Nothing else to say

Jake, please listen to Ann and remember your anxiety level. Trends are what matter and yours are doing fine. Stop looking at each test as a marker of your health and instead look at the trend. As long as the numbers stay solid, the trend is good and you will be fine.

Speaking of which, have you tried any anti-anxiety medications yet? Sounds like you could use a little help.

Don't even get me started. Also why on Earth are you testing your CD4 every month. I hope this is only because you've recently stopped medication.

Also maybe someone is more familiar with this but I could've sworn there was evidence that stated that your immune system falls rapidly back to pre-med numbers once you go off of them? Anyway, best of luck to you Jake.

Thank you bug and hellraiser. I just had it in my head that if it drops that in a month it will keep dropping at that rate. I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time. It hasn't even been a year and sorry for asking stupid questions. But I also know I'm not the only person that feels this way. I know people here have it worse, longer, and know more than I do but what I'm going threw (no matter how small) feels big too me. Best of luck to all and I wish you nothing but good health.

If your CD4 count is within normal range ie 500-1,600 or so, then any recorded variation is immaterial and shows nothing, there's lots more cells to move around the body, and they do go in and out of peripheral blood like yo-yos.

I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time.

Jake, it's your life-- you can do what you want. I highly doubt the above is your goal, but if you keep playing around with this it will be the end result. Once again, your choice.... we don't have to necessarily agree with it.

I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time. It hasn't even been a year and sorry for asking stupid questions.

Jake, you're not wasting anyone's time and you're not asking stupid questions. We just want you to realise that you're ok and please, try to relax a little. You've actually had very many well thought out responses in this thread (hijack aside, which was dealt with).

If I offended you when I said "What the hell are you complaining about", I can only sincerely apologise. I didn't mean it like it would seem you took it - maybe I should have added a smiley as I meant it in a light-hearted way. I wasn't trying to trivialise, I was only trying to show you that the drop wasn't anything to worry about.

Your CD4 numbers are going to bounce around and it's something that you will get used to in time. As someone else mentioned, you should also be looking at your CD4% as this is a more stable number and will shed light on what's actually going on and where your trend is at.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

My meds sparkle when you take them out of the bottle. They also pop and crackle in my mouth. Love 'em.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

the pills not bothered me much actually. but i am not from your country, i said bored because in my country it made me (i think for other HIV carrier too in my area) feel like i dont want to go to get the medicine. probably you all will not get how the feeling is.

the pills not bothered me much actually. but i am not from your country, i said bored because in my country it made me (i think for other HIV carrier too in my area) feel like i dont want to go to get the medicine. probably you all will not get how the feeling is.

How about introducing yourself in a new thread and explain what you're trying to convey. I'm not sure how you feel because I'm not sure what your issues are.Greg

PS, we're not all from the same country.

Logged

Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Thank you bug and hellraiser. I just had it in my head that if it drops that in a month it will keep dropping at that rate. I have to say I think I am going to stop posting until I hit aids status or I am hospitalized because it feels like by people responses I'm wasting your time time. It hasn't even been a year and sorry for asking stupid questions. But I also know I'm not the only person that feels this way. I know people here have it worse, longer, and know more than I do but what I'm going threw (no matter how small) feels big too me. Best of luck to all and I wish you nothing but good health.

Sincerely,Jake

Not my intention so if you got this from my post all apologies. I tend to have a brusque tone on the internet anyway, sorry. Anyway I think what some people were trying to say is the fact that you're at 797 CD4 is a stellar number even if it is a lower number than your previous result. Next time you test it may go up again you just haven't had enough tests with enough time between them to draw any long term conclusions. Dude frankly your anxiety level seems a bit high, is everything okay?